The Journey of James Weston

Monday, December 20th, 2021 Mom bought James this plaid Christmas onesie in a size 9 months! 🤦🏻‍♀️ It looked really long in the legs but it's not snapping under his diaper. It's way too small! Getting it on felt like a scene from Tommy Boy. What's crazy is that some 12 month sizes in the same brand are getting really tight on him. And yet in another brand, they are huge! 🤷🏻‍♀️ The good thing is that James is growing! He gets measured and weighed at certain doctor's appointments but we can also tell just by his clothes getting a little tight. Especially in the torso. His legs and arms are still a little short. We need to schedule a follow up appointment with orthopedics and genetics. Yay co-pays in the new year! Mom called the DME today to try and get an update on the peer-to-peer review outcome on the trach. But of course no answers. Just a name of someone to chase down who might know something. Left a voicemail. We also followed up about being shorted some supplies...

Sunday, December 19th, 2021 This is the first time Mom has been able to hold James like this. He doesn't really like to be cuddled and it's common for trach G-Tube babies to not want to be in this position. Mom pulled James out of the bouncer and he was so tired that he let Mom hold him like this while he slept. So Mom asked Dad to take a photo and then she cried (without trying to wake James up), because it's taken almost a year to be able to hold James this close. We've had to stick to football/cradle holds. Bonding has been  hard... with him being "hands off" for months in the NICU, having a scheduled 30 minute window when we could put our hands in the incubator hoping he would hold our finger, the first hold being at 48 days, pretty much bed bound for the first 8.5 months of life, not being able to breastfeed or bottle feed, and taking on the role of nurse sometimes gets in the way of being a parent. We were only able to do skin to skin 3 times in the hosp...

Saturday, December 18th, 2021 James is obsessed with grabbing his feet and touching his toes. In the evening, James sat at the kitchen table with Mom and Dad for dinner. We are trying to get him out of his bed or sitting up whenever he is not sleeping or napping. It's not only important for his development but for his core strength and to improve his flat spot on the back of his head. At our next pediatrician appointment we will be inquiring about a helmet. P.S. James' 1st Birthday is coming up! Wouldn't it be fun for James to read an email from you when he is older? What a treasure! His email is JamesWestonAbramowitz@gmail.com. How awesome to get his reply back in like 10 years...